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Speech by Margaret Tuchman given at Neural Interfaces DBS Patient Panel - August 21, 2006 Bethesda, MD

Margaret Tuchman

My name is Margaret Tuchman. Before being diagnosed with Parkinson's disease in 1980, I had what you might call a normal life. I participated in the Hungarian uprising in 1956, fled the country to escape the bloody repression that followed, moved to this country, got married, got my Masters, and got Parkinson's. By 1999 I was ready to try what was then an experimental treatment, DBS. I had tried all the individual and combination of medications. I had little trust in ablative techniques; and even less trust in the so-called restorative techniques such as tissue transplantation and gene therapy. DBS can provide symptomatic improvement in a non-destructive and reversible manner. For me, that feature tipped the scales in its favor and indeed has become the procedure of choice.

I had bi-lateral DBS-STN in December 2000. At that time the procedure was considered experimental since the FDA had not yet approved its use for Parkinson's disease. There were major gaps in the information available to me. Perhaps, this is understandable given that it was early in the use of DBS for treating PD. However, today's patients still have to make decisions with major chunks of information missing. Truly fine stores have a policy that we often think of as "the customer is always right". Patients are the customers of the medical profession. But when it comes to treatment, too many medical professionals are guided by less positive principles; First is "what they don't know won't hurt them And Second is "we don't have to improve because we are the only game in town." I cannot over estimate the importance of selecting a top-notch movement disorder team.

I found my DBS team by word of mouth; they were recommended by a PD patient in whose judgment I had great respect. Other patients are less fortunate and have had bad results or experienced unnecessary discomfort because there is no readily available statistical information about the qualification of the different teams. Lists with names of neurosurgeons that use Medtronic devices in their practice cannot be used as testimonials to good and safe surgery. My expectations about having DBS-STN were realistic, I thought. 1) I passed the important qualifications to be considered a good candidate for surgery; 2) I was still responding to sinemet (L-dopa); 3) I passed the neuropsychiatric test; 4) I appeared to be without dementia; 5) I was physically healthy and had a strong support Network. While sinemet worked it was a miraculous answer to PD patients' dreams. It had been the drug of choice; the yardstick for selecting the potentially successful DBS candidates. I was told that after having DBS I will feel like every day was my best "ON". There have been days, and even weeks, when that prediction has come true. But then there are periods of time when these significant advances are lost.

Frankly, what we need to do for patients is to give them far more information about how the different aspects of the surgery will fall into place and what each precise piece of knowledge will mean to them. For example, we don't yet know the long-term effects of DBS. Are all patients informed about that? This information should be explored and developed so that all concerned, including caregivers can have realistic expectations about the patient's current and expected conditions. Many real or imagined crises could be averted if the patients had the ear of the doctor, and a caring assistant as part of the team. DBS is elective surgery. This is important information. Both the patient and members of the medical team should take time to explore all questions about the pre- during and post surgical elements, before, during and after the operation. In addition to providing information, there is another area where the medical community could do much to improve the DBS experience. The patient emerges from surgery with a tool in his brain. But that tool needs to be used correctly or the patient does not reap all of the potential benefits. In my opinion, a majority of DBS patients go through periods of incredible frustration because their programming is less than optimum. Today, there is a shortage of professionals who know how to program with the level of expertise necessary to secure benefits for the patient. What is needed is an algorithm that enables a "C" student to hit the programming bull's eye, not to try and create more "A" students. It's nice that people are working on that. What I want to know is WHEN WILL IT BE IN USE? We are dealing with a worsening crisis of more and more people having the surgery, while we already face a shortage of skilled post-operative professionals to handle programming. Dr. Erwin Montgomery Jr. M.D., Professor of Neurology, University of Wisconsin-Madison, wrote in his "Deep Brain Stimulation Programming" paper that "there is no way to determine ahead of time which DBS configuration and stimulation parameter sets are going to be optimal for any individual patient. DBS management is also challenging because there are literally thousands of possible combinations of DBS active contact configurations and stimulation parameters. One of the most common errors in DBS management is the lack of persistence. If a patient does not achieve satisfactory control, then there may be a hardware failure or the DBS lead is not positioned correctly, or there is a DBS lead migration. Methods to analyze which occurrence is the culprit is obtained by elimination. The MRI scan assessment both before and after surgery is of paramount importance for immediate identification of problem areas. But we need 2 sets of MRIs. My contacts with DBS patients reveal that often the team may be remiss in following through with administering the MRIs. This mistake can cost the patient unnecessary pain. Occasionally, a patient may achieve a very satisfactory response in the doctor's office, only to do poorly at home. There may be a number of reasons for this: 1) The patient is not examined thoroughly during programming; 2) Settings are not done in an organized manner; 3) The patient is rushed through the steps of adjustments (we should have a complete cycle of pre and post medication); 4) DBS titration and drug titration should not be done at the same session; the patient is fatigued doing the same UPDRS exercises and perhaps, most importantly, hours or even days need to pass before full optimizations of both drug and setting are achieved. The DBS apparatus can be improved. The need for added surgery to replace two IPGs is unacceptable. There should be a meter that is precise and shows the levels of voltage and other values so we don't have to look into our crystal ball to evaluate and estimate which of our programming values are losing strength or are still effective. Let me use myself as an example. I had a perfect adjustment prior to my ill-fated decision to jump-start my battery. I was at 4-1/2 years and I feared that my system could close down if I waited the recommended 5 to 6 years. Of course, an external battery charger would resolve the problem of guessing the remaining voltage. My body was accustomed to certain settings and titration of meds. When the new batteries were placed under my collarbones there was no adjustment to my meds. My STN required less voltage. I was on overload. I reverted to prior symptoms: dyskinesia, tremor, quick ons and off, balance and gait problems. I had an adjustment a couple of months ago and we decided to start a new medication as soon as possible. With my neurologist's approval an order was placed for Neupro (Rotigotine patch) for the treatment of patients with advanced PD. I haven't received the medication yet so I cannot report on its success or failure. I am counting on my good luck of outrunning the rat pack chomping on my heels!!! Tomorrow's technology uses biosensors to monitor the degenerating neurons in the Parkinson brain and stimulate healthy communication. While this is also not a cure, this technology can greatly aid in controlling the disease. The biosensors are developed using carbon nanotubes and nanowires which are 100 times the strength of steel yet 60 times lighter. The entire biosensor chip is less than a centimeter in size and similar to those found in computers. I wonder what progress will be made as a result of biosensors and nanotubes? THIS IS A QUESTION THAT NEEDS TO BE ANSWERED BY YOU, THE AUDIENCE.

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